'From decision-making to advance care planning, here are the difficult things we need to all know about palliative care for the loved ones we look after.'

Being someone that's witnessed some of my dearest loved ones navigate the way forward with life-limiting illness, and end-of-life care, I can understand why Victoria’s new free specialist palliative care resource, Palliative Care Advice Service (PCAS), is so profoundly important.   

Just last year I witnessed my Aunty Rosemary die from cancer barely 12 months after her diagnosis.   

In the last three days of my Aunt’s life, she lay unconscious; I sat next to her bed alongside her husband, my uncle Eric. 

We chatted to Rosemary, to each other, we took turns in holding her hand, in stroking her hair, in ensuring that anytime she made a whimper of pain that we informed the nurses so that they could provide more relief and she could be as comfortable, pain-free and peaceful as possible. 

The months leading up to this though were not as peaceful or pain-free, not for her, nor for those who cared for her and loved her.

Rosemary transformed from a fit and healthy woman in her fifties who walked six kilometres every day and worked full-time, to using a walking stick or a walking frame for even the shortest of distances, often not even able to walk at all.

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She could not drive due to the surgery on her brain to remove one of the secondary cancerous tumours that had grown there. She could not use the toilet or shower without the help of mobility and support equipment.

She was cold nearly all the time. 

Eric was her primary carer from the time of her diagnosis, all the way until her final breath.

He drove her to the hospital, suspecting something was not right and then when they confirmed a cancer diagnosis, he sat next to her bed in the emergency department, trying to remain positive and supporting her despite knowing their lives had changed forever.

The following day when I went into the hospital to visit Rosemary, instead of resting she sat up in her hospital bed on the phone talking to her employer and providing instructions about what needed to be done so her job could be performed while she was on sick leave. 

Our Rosemary. Image: Supplied.

Eric too was on his phone, crying, as he spoke to the insurance company who were refusing to pay for the brain surgery she needed to have to remove the secondary tumours.

He was overwhelmed and not in a state to be dealing with this situation, so I offered to help despite also being absolutely clueless about what I needed to do and how I needed to do it. 

Hours and multiple calls to my aunt’s specialists, GP and the insurance later, the issue was eventually sorted so she could have the surgery. 

The stress and emotional toll was skyrocketing by the day for Rosemary and Eric, as well as for myself and our family. But finding the right service and the right information at the right time within a complex healthcare system was amplifying the stress and turmoil.

Eric found this side of things particularly difficult to navigate, and we found ourselves in these types of situations regularly, trying to wade through the information together.

From sourcing services and financial support from Centrelink, Medicare, insurance and work, as well as deciphering the medical and bureaucratic terminology to fill out the paperwork associated with them all.

He searched online to source mobility items and then installed them, drove her to have her wigs fitted when she lost her hair from chemotherapy, he listened to medical advice alongside Rosemary and then tried to decide on the right treatment options; they navigated the barrage of appointments, side effects and researched remedies to the side effects so she could live somewhat normally. 

For both Rosemary and Eric, it was like being thrown in the deep end. For Eric though, not only was he treading water for himself but also for Rosemary too. 

While my support was not comparable to my uncle’s, I too provided care for her when and how I could. But for Rosemary, Eric and myself, all of these tasks were often incredibly hard to perform because they were confusing and overwhelming. 

It was obviously also incredibly difficult emotionally for Eric, not only Rosemary’s carer but as her husband. He watched on, often feeling completely helpless as he lost the love of his life, his wife of over three decades.

I too felt the same: completely hopeless. 

But our emotions were put on the back burner because they were not our priority. Sometimes navigating the tasks and paperwork needed for Rosemary's health even took from our time and energy with Rosemary as well, precious time that we can never retrieve. 

Being someone in this position and witnessing it with those I love allows me to understand why the new government advice service, Palliative Care Advice Service (PCAS), is an incredibly important service for all Victorians to know about.

This service is free to use, and provides information, guidance and support by palliative care nurses and doctors to any Victorian, who might be living with, or supporting someone, with a life-limiting illness or in end-of-life care. That could be anyone from their family, carer, neighbour, loved one, or even used a resource for any healthcare providers or workers in this space. 

For yourself or someone you love that's living with life-limiting illness, they can help with questions like:

• How could palliative care help the person I support?
• What do I need to think about and plan for?
• Where can I find information about being a carer?
• What can I do about my own, or my loved one's nausea or breathlessness?
• How do I find the right palliative care service in my area?

PCAS answer your questions and can provide specialist evidence-based advice on things like pain relief and other symptoms, through to what to plan for and how to discuss palliative care with health providers. The service can help navigate the complex healthcare system or direct you to where to find out more information.

Healthcare workers like doctors, nurses or other providers can definitely utilise the service too, to assist them in providing information on symptom management, prescriptions, converting medications from oral to injectable, or even decision-making and advance care planning advice for their own patients. 

It's incredible that this resource is free, and would make a very impactful role in helping families, just like mine, figure out all the complicated questions, bombarding information and decisions that need to be made around palliative care.

PCAS is completely confidential, and available to talk to between 7am to 10pm, every day of the year. You can chat on the phone, 1800 360 000, or find them online for advice, pcas.org.au.

Whether accessing the PCAS for advice, or even just for a supportive ear to listen, I know, without a doubt it would have been of great benefit for my uncle, my aunt and myself, and I am comforted that it can do this for now other Victorians during a time when it is needed the most.

Feature Image: Unsplash.